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Calf Fasciculation, or Benign Fasciculation Syndrome (BFS)

If you don’t read anything else, read this: if you have fasciculations, stop worrying. Anxiety makes it worse. And it’s almost certainly not dangerous or indicative of another issue. Go to the doctor who will confirm that. Now read on.

In January 2014, one evening, I suddenly began having twitches in my calves. Not just little twitches, either. It was the entire muscle – right from my ankle to the base of the back of my knee. In both legs. And it was all of the time, 24 hours a day. I read someone else describe it as like having “insects crawling around under the skin.”

Now, if this has happened to you, there’s good news and not so good news.

Good news:
It’s not going to do you any harm or shorten your lifespan or anything like that.

Bad news:
There’s not much you can do about it.

It wasn’t particularly noticeable during the day, when exercising, but when sitting still it became too annoying. Not painful at all, but uncomfortable. I found there are two ways to reduce the annoying-ness:

Have the calf muscle in a stretched position

Have the calf muscle pressed against a surface.

Having the muscle stretched meant standing up. When sitting on the sofa, I’d have my legs pressed against the base of the sofa, and then I could sit without it annoying me too much.

The first couple of days were the worst, because I wasn’t used to it. I felt like it was making me feel fatigued, but later realised this was psychosomatic. I desperately ran through the possible causes:

Poor quality shoes I had bought a few days prior

Exercise (running) on the day it started, immediately following a blood donation session

Deficiency in Magnesium, Calcium, or Potassium

Deficiency in something else, maybe related to being vegetarian

Stress (a common cause)

Tiredness

Medication side effects (I wasn’t taking any)

Alcohol intake (I hadn’t been drinking, and rarely drink much)

Infection, eg. Lyme’s disease (I didn’t have anything I knew of!)

Having run through the possible causes, I narrowed it down to having ran back to the office immediately following a blood donation session. You’re really not supposed to do that. I remember my calves having been really sore, and this was understandable since a pint of blood was missing from my body via which to transport oxygen to exercised muscles. I had quickly caused some kind of muscle damage to myself through careless behaviour.

After around 4 days of desperately hoping this stupid twitching would stop (and initially believing it would), I realised I’d need to try and find a solution. The worst part was that I was finding it hard to sleep. The internet wasn’t much help but I compiled a list of potential short-term remedies:

Take calcium, magnesium and potassium supplements and get tested for deficiency

Take Quinine (tonic water). Apparently it’s good for cramps. It tasted awful and didn’t do anything. Apparently quinine tablets would be needed to get a high enough dose to have a chance of doing anything.

Reduce caffeine intake. I stopped consuming any caffeine for more than a week. It didn’t work.

None of these did anything. I had no deficiencies (other than in common sense). As time went on I got used to the fasciculations. Sleeping became easy again as I learned to either sleep on my back (calves pressed against the mattress) or on my side (weirdly configured so that one calf was pressed against the other). My initial feelings of fatigue evaporated after just a few days and I started to feel fine and energetic again, having realised that the fatigue was brought on by the mental irritation and depressing google results I was finding.

Note to self – googling a medical issue is a BAD IDEA! Only a doctor can tell you what your ailment is!

Strength training/weight gain. I started Stronglifts 5×5 and the GOMAD diet (google it) and gained 10lbs (mostly of fat, in fairness) in three weeks. I became stronger, including my calves. Which was nice. I’m continuing with the strength training.

Copper ointment. Apparently this “complimentary” medicine helps with cramps and damaged muscle. I maintained putting it on my calves for a few days and then lost interest. I don’t think it was going to do anything.

Acupuncture – I’ll resort to this if I get desperate and have some cash to throw about.

Homeopathy – I’ll need to be very desperate to try this, but who knows. That day may come.

I should mention that I visited the doctor twice. The first time, I was told it was nothing to worry about and to come back in a few weeks if it continued. The second time, I gave a blood sample for calcium, magnesium, and potassium testing – these were negative. I haven’t bothered going back because I know there’s no proven treatment.

How am I doing now? Well, it’s been three months, and the fasciculations are still there. I feel like it’s less intense, though. I can sleep without pressure on my calves – this has only happened in the past two weeks. Sometimes it feels like they’ve stopped, but when I roll up my jeans, they’re still going. Oh well; as long as it feels better, that’s the important thing. My best guess for the cause of the improvement is my weight and strength gains. It may be coincidence, but the calf improvements did seem to begin about a week after I began strength training and weight gain. I’d recommend strength training anyway, since it’s a good health improvement to take on.

Apparently, in a large proportion of cases, this condition subsides within several years – maybe not completely, but often noticeably. The main thing is that it’s not worrying me anymore, and I’m fully confident that it’s going to disappear before the end of the year. In three months it feels noticeably better. After exercise it becomes much more intense, but that’s to be expected and is not a problem.

I have written this post because of the lack of information I found on the internet when trying to self-diagnose. All I found was loads of people deciding that they probably had a disease called ALS. Which they don’t. If recommend you attempt all of the remedies I’ve suggested, starting with the most common ones: stress, over-exercise, alcohol/caffeine consumption, and mineral deficiency.

Leave a comment if you have something similar or know of a potential treatment I haven’t suggested. Good luck!

Update 31-Oct 2014: It’s been 10 months. It’s as annoying as it was at the beginning. I sleep with pressure on my calves: lying on my side, with one on top of the other, or on my back. Oh well…otherwise healthy

Update 25-Mar-2015: Now 15 months. Nothing new, except it’s totally normal for me now. I don’t run any more because my calves are usually pretty sore afterwords. I walk a lot which I don’t think makes it worse. My son woke me up from a deep sleep one night, and it felt like the fasciculations had gone. I felt my calves and couldn’t feel them moving. I went back to sleep. I don’t know if I was imagining it but that’s the only time it seems like they stopped. I love reading the comments. Makes it all seem normal!

Update 18-Aug-2015: They’ve stopped. Not all at once, but gradually, over the course of the past 6 weeks or so. Actually I think they’re still going but very, very faintly. I don’t think there was anything I have done differently in my life – I have no idea why they stopped. It was about 17 months in total. Weird!! As someone posted in the comments, here is a site with more information, and a discussion forum.

Thanks. I’m with you. I have the same “problem” for two months now. I went through a 4 weeks long ALS panic, i always lost my girlfriend because of my behavior during that time. I found some sites about BFS much better now. The (sometimes extreme) twitches are still with me, but my peace of mind becoming greater. Now i found this article, one more step for me on the right way.

I have had this for many years. It was first noticed when I was 10. I am now 57! the rippling under the skin is there 24×7. The only thing I can think of it that I have always been very physically active. I rode everywhere on my bike as a child, sometimes around 20 miles a day to various places. I played a lot of sport that involved sprinting. I continued playing football (soccer) up to the age of 45 and still play small side football now. When I asked about the condition to a personal trainer, he said he sees it a lot at his gym and he believes it to be ‘action ready’ muscles – muscles that are primed for ‘fight or flight’.

All I know is that I have suffered no ill effects, I am still healthy (relatively!) for my age and continue to exercise as much as I can today.

It’s simply something I live with and a constant fascination to my children!

Johnny…I hope this thread stays alive! It’s good to know we aren’t alone, isn’t it? I have had BFS for almost two years now. Started when withdrawing from one antidepressant to start another. I have a serious anxiety problems and was very stressed out, had horrible transition side effects. Makes sense I’d end up with something like like this. In my calves and feet mostly, sometimes face and back. I still walk, hike, bike and stay active. If I don’t exercise a bit, my legs will ache sometimes, my feet really ache. I’ve found that the aching typically goes away with exercise. But not always. So it keeps me moving, which is good! Any how it’s something I live with. Would love folks to share information on things that work to soothe it a bit, or if anyone hears of research being done. BTW…I am on Cymbalta and can’t say it helps much. The bigger twitches seem to be fewer, but I still have the “bugs under my skin” or buzzy feeling, in legs and feet.

What you went through is exactly what is happening with me right now. I did a anxiety med transition and had terrible side effects. This is the one that seems to be staying after 3 weeks. They’ve started blood work and the results are due tomorrow. Praying for an answer.

Hello, I have been having calf fasiculations for 3 years, they started after a night out when I was sat on a chair with a bar on it under my knees. It was in a damp marquee in June and I sat forward over the table as it was a quiz night. I got up to go and my legs were stiff and cold, I went to bed and could not sleep because I could not relax my legs/muscles at all, my legs were so cold. I was suddenly woken by the most excrutiating pain in my left calf, I could not get rid of it, it lasted several minutes and every time I tried to get my foot/calf/ankle out of it, it went straight into spasm again. I had to take amitryptyline and get a hot water bottle, eventually fell asleep, then it happened again, exactly the same process, when I got up in the morning I could barely put weight on my left leg/foot, it was very weak. I didn’t follow it up immediately hoping it was a one off, but no there were to be several nights like that over the next year. I still have the fasiculations 24/7 and the cramps and spasms but they are possibly less frequent now. I have asked drs and specialists and no-one knows what happened to me that night. The year before I’d had an emergency op for a slipped disc on that left side and I’ve thought the two were maybe connected. I now have severe arthritis pain in my back also, the pain can be dreadful, gets me down, several things i cant do anymore. Get terribly stiff from sitting in one position at a desk at work for several hours. Stretching is important of this leg, I think that is helping prevent quite so many cramps, I was prescribed tablets for a month or two but they didn’t stop the twitching so I didn’t continue with them. I hope they eventually go, they are annoying and no-one has even said I might have BFS, sometimes you just want it named. Good luck to you all with this frustrating inconvenience

Hi I’ve had weekends in tight leg for about 18 months but omg about 11 weeks ago noticed calf muscle wasting in right leg only then wierdly 2 weeks or so the twitching started omg and the electrical muscle spasm I have felt this go slowly over last 9 weeks or so travel up my leg into my bum cheak then last 4 days like a battery is inside my groin now I have no twitching but muscle wastage in bum and calf. And now extreme back ache. Omg what’s going on I’m in hull hospital was admitted Friday and I’m having lumba puncture. MRI and EMG I am told ?????

Thanks John,
I have had this same condition for about four years. I get them only in my calves, and all of the remedies I have tired as well… I have been to several doctors that were not concerned about it. Personally I think it is due to excessive exercise because my muscle twitches always flair up when I train. I compete as a bodybuilder and notice when I take a few days off from training they always diminish but do not completely go away. I think this combined with my hypothyroid disease causes some weird things to happen within our bodies. It is a annoying, but something we have to deal with.

Thank you for posting!Your symptoms sound similar to mine. Twitches in my calves that are annoying and occasionally painful. I have been having them for about two years and they come and go. I went through a bevy of neurological tests- MRI, EMS, NCS, blood tests. All came back normal and they said it was BFS. I think- and one doctor agrees that it might have to do with Lyme disease I contracted because it started soon after I had it(though all Lyme disease symptoms are gone). I am not very stressed and have cut back on caffeine but haven’t seen an improvement. For me, there are a few things that seem to help: Lots of standing or walking, exercise and stretching. I have also found some relief with acupuncture. I think it makes a difference and also is very relaxing so that’s good! I do wish they would go away, because I don’t want to have them my whole life and wonder if there is any doctor out there who might be able to help..

Hi, very similar to my condition. i too use the sofa and mattress as a ‘buffer’ for this annoying condition. I’ve had it for four years now, and it has spread from my calfs initially, to my feet, thighs and recently to my hands. mostly 24/7 but with periods of about two hours every few days where its very slight. i haven’t tried any changes to my diet yet, but i’m just starting a magnesium supplement today, (worth a try). If only i knew what causes it to subside for a while. i’d probably be half way there for a twich free existence! i have been subscribed Clonazepam for it. But this is just a sedative to take at night, so i can get off to sleep quicker!…not a cure! i’ve had the usual tests for other possible causes, but this a bit of a tricky one to treat. Doctors are a bit puzzled as to what causes it and what could cure it! I’m hoping it will just run its course over the next few months or years. Thats all i can do at the moment….Here’s to hope.

Thanks to all of you for your postings. I have had these fasciculations for over 10 years and recently they have gotten worse and worse. After reading a lot about BFS I’ve decided there’s no purpose to be served and going back to my neurologist. I think it’s something I will just have to live with the rest of my life.

Very interesting. I have been struggling with which I now know to be BFS for years. The Physcial Therapy Doctor, primary physician, vitamin stores, etc all knew nothing. Thanks for your review it helps me fell better and that the are not aliens living in my calfs. I went and had an EMG this AM and the doctor clearly diagnosed as BFS for which there is no known cure. Thanks for posting

I have had this condition for three years. At first it was constant twitching all over my body and has slightly diminished over time. Don’t know how or why it started and haven’t figured out how to get rid of it but like many of you stated nit many doctors know what it is. My neurologist said not to worry about it? Its just annoying!

I had this for 6 years from 2000 to 2006 and then is went away totally within a week of getting pregnant. I had constant twitching and cramping ALL over my body. It was a nightmare. Then in 2013 it came back, but not as bad this time. I twitch mainly in my calves 24/7 with random blips all over. It came back one night after I had a terrible nightmare. I woke up…walked out to the kitchen and got a bowl of cherrios, sat on the sofa and it all came flooding back like a wave. So bizarre. I have never had weekness or wasting..its just one of those things.

Hi its wierd you saying about it stopped when you were pregnant because i started getting mine summer of 2013 and then i fell pregnant and they stopped then when my baby was about 4 months old they have came back!! Waiting to see my nerologist on friday!

I first experienced fasiculations in 2001, as an addition to another syndrome. The primary complaint was unexplained neck spasms, together with a curious “needle like” sensation over the right hemisphere of my head. These spasms then spread down the thoracic section of my back, together with fasiculations that eventually spread to my legs. I consulted the usual medical fraternity with little result. A respected neurologist, confidant I didnt have ALS, didn’t even refer to benign fasiculations. A sympathetic microbiologist, who tested me for Lyme disease (negative, although I had a tick bite a month before) suggested I consult an old-fashioned psychiatrist, who was also a good diagnostician. He correctly noted that my CNS was in a “hyped” state (I was finding it difficult to sleep), and prescribed Prothiaden (Doxiepin), whic I tolerated very well, & which had me able to sleep soundly after a few weeks. All I can say is that I gradually got better over a period of 6 months, till the pain was but an echo of the original, and the fasiculations disappeared. I don’t know what caused them, though the tick bite and a virus are the chief suspects. After 14 years I have developed the same symptoms, though far less severe. I believe that a virus has possibly triggered them. However, I have also since learned a good deal about neural plasticity, & believe that old nerve pain pathways can be reenergised by various triggers. I am back on Prothiaden & my neck pain and spasms have subsided significantly. I have yet to see much improvement in the fasiculations, but hope they go away in the same way as they did in 2001. I have gone on the net to see if there is any new research, but clearly the medical profession has other priorities. However, wonderful new work IS being done by a sinal surgeon in Seattle. Read David Hanscomb’s book “Back in Control”. He doesn’t refer to fasiculations, but I suspect they are part of the same syndrome as he writes about.

Hello everyone i have this from 1 year frist go with my big finger moving without no reason ,then go in the left eye lid even eye and stayd there for about 1 week after that ,the tiwch gone ,and after 2 months apeared on my left leg some were at the middle of the leg and twich for 2 week non stop ,with just small pause ,after this 2 week the twich spread all over my body ,neck ,eye lid ,head ,fingers ,stomac ,betwen the legs were prostat is ,butts all over ,tiwching in one part and then go in other part and so 24/7 ,after this the twices are more concentrate in the left calf ,but in the right is not non stop like in left .
Now i get in the left calf a lot ,even in right calf ,in other parts of my body ocasional twich ,so i made EMG all things ok so no ALS , the doc sayd magnesium deficiency and i get to vitamins ,try it a lot no efect ,all test good ,i make lyme borelia test ELFA metod and came clean ,make MRI just a benigm pinel chist from i was born .
I go again to neurologist with MRI test show the results and ask hijm if that pineal chist from i was born is the problem ,and he sayd me no no way that chist can’t the twices ,no demineralizations ,so single diagnostis is BFS .
This tiwces are damn anoyn and sometimes when you go to sleep ….i goo crazy ,i guess i have to live with them maybe for the rest of all my life ,since no vitamin ,no magesium concentrate dose make a diference and no efect there is no cure ,single cure is the drugs like Clonazepam etc ,but i refused to take them ,other is the weed but in my country is not alowed,so ,i dunno what to do .
In those days i thinked to go to make again the lyme borelia test maybe the frist test was rong and have this terible virus …but lyme give some symptoms wich i dont have them ,and i dont remember to be bite by a tick ,so we got to live with this ,tnx god is not ALS .
Doc sayd if you twich for 1 to 2 years and no muscle atrofy weakness the single diagnostic is BFS

Hello George,
Hope your twitching is gone away. How are you doing?
The fasciculations started in my body 10 days ago.
I have been to the neurologist and the physical checking was fine. So, he made an appointment for next month.
Cheers!

Thank you so much for this man. Both of my calves, but mainly my left, have been twitching for about 6 months now. At the beginning I latched onto the ALS thing as well…..and SUPER freaked myself out. I even went to a neuro (asshole) who, when he ask me my symptoms was saying “Well which is it, is it twitching in your left calve or both? If it’s just the one you should be worried) At that point I freaked out even further, and wasn’t sure if I was twitching on my right calve. Everytime I would feel it on my left (24/7) and not my right, i would pull of my jeans and 95% see some sort of twitching there too, just not as noticeable. Whatever….I had another ALS phase when I convinced myself I was walking funny, but i just became convinced that was me being paranoid again. However in the last week or so, My shins have started really hurting when I walk…not for long, I go out and after 50 steps they really hurt. I need to sit down but almost immediately they feel okay and i can walk normally again, but only for like 50 -100 feet before my shins hurt too much. Anyways. Wasn’t freaking out about it tonight until I got online and of course, just type in the word “legs” in google and ALS horror stories come flooding in. So I was freaking out until the next article was yours….thank you for that sir! Best of luck and great advice on the being calm front…..

I’ve had twitching in my calves, especially the left one, for years, but especially in the last decade (I’m 54 now). Most of the time I can ignore it, but some nights the aching will keep me awake and restless. I’ve found that taking potassium helps a lot, probably because the blood pressure medicine can make me “spill” potassium. Calf stretches help too, especially on days when I’ve been sitting at my desk a lot.

On those nights when my legs are just going gangbusters, I’ll pull on a pair of neoprene leggings that cover my calves from the back of the knee to the ankle. They’re fabric coated, zipperless, and easy to slip on/off. They are just barely snug and not tight at all. I purchased them from Amazon, and I think they’re intended for athletes to keep their muscles warm. While they don’t actually stop the twitching, they contain it in a way that relieves the ache and occasional deep muscle cramps. I’m able to ignore the twitching and sleep soundly.

Sometimes they can get warm (they don’t breathe), so I’ll wake up and pull them down or take them off, but usually I can leave them on through the night.

If you try this, be sure to treat the leggings like any workout gear and keep them clean. A light spray of an antifungal is also a good idea.

Nice article.
I’ve had this for around 10 years. At one point it was disrupting my sleep and I was given Gabapentin. I think the Dr thought it was RLS. I stopped taking it after a month as it was still happening and I didn’t want to be on a drug for life.
I am used to it now, but on occasions it gives me a little trouble (like today, hence my being here!)
I exercise a lot (ran and walked over 1500 miles last year) makes no difference
I think mine was as a result of a herniated disc which led to some permanent nerve damage. I had back surgery and it seemed to happen after that.
I just consider it to be a party trick now – freaks some people out.

Hi i started getting twitching everywhere all over my body, stomach, back, thighs, calfs, biceps, even on my tongue! This has been since summer of 2013 then i fell pregnant and they dissappeared, august 2014 my baby being around 4 months old its came back, still the same, i started googling and things like als, ms mnd were all popping up and i started taking panic attacks couldnt eat for about 2 weeks with the anxiety, my doctor gave me beta blockers (propanalol) to ease my anxiety, its calmed me down but the twitching is still here, ive also tried taking magnesium but with no luck, its now january and ive just got my appointment in to see a nerologist this friday, so im hoping everything comes back normal and i can start to enjoy my life again

I’m now “in the club”. My issue started several years ago with cramps in my calves & feet, but only when I was in bed. Then on occasion, I’d get calf cramping on the bike. Then I started getting cramping anytime my legs were prone (e.g. in a recliner). Then it happened more on the bike and occasionally when I was standing.

Then a handful of weeks ago, the cramping improved a lot — didn’t go away, but the frequency and severity of the cramps decreased. And the calf fasciculations started – both of ‘em. Anytime I’m sitting or laying down. Don’t seem to notice it much when I’m standing. A little bit of cramping and perceived weakness on the bike, but according to the numbers I’m riding and climbing stronger than I have in 5 years (feel weaker, going faster — weird…must be my noggin’).

‘Did the ALS freak out (I had a front row seat watching this disease take down my father-in-law; I remember the cramping in his left leg that was the start); it wasn’t a HUGE freak out as I know a bit about the disease. Kept thinking “sh*t, that cannot happen to my wife”. Got past it pretty quickly.

‘Have been to the doc, checked out the blood work (all normal), and gotten my favorite medical term: Idiopathic.

Anybody else have a “path” that sounds like mine? I’m assuming the cramping and the fasciculations are related.

I would say they well could be related. My scenario is pretty similar to yours. I’ve had cramp occasionally in my left calf over the years (I’m 48) but about 4 months ago I had the most dreadful cramp one night, so much so that even standing up on a solid wood floor I had to force my heel to the ground it was so painful. After this it’s like my muscle has a memory? If I stretched out in my sleep I instantly got cramp in that calf but it subsided within a couple of seconds of me standing up as if the muscle was playing somehow?

I don’t do a lot of structured exercise & my walking was more of an amble taking lots of nature photos but 4 weeks ago I started doing daily short brisk walks to get fitter, maybe 1 mile steep uphill & 1 mile back home walking at 3.5 miles per hour pace (according to the MapmyFitness App I use). Well about 2 weeks ago I noticed my left calf muscle is constantly twitching. More noticeable at night but also in the daytime if I’m sat quietly. Quite disconcerting but I’m not unduly worried having read about Calf Fasciculation.

I do have a fair bit of stress in my life right now, we’re trying to sell our house (unsuccessfully so far). I run our home as a B&B in Ireland and our 14 year old dog is causing a lot of disturbance waking me up early scratching the door to be let out. I wake up several times a night imagining I can hear her, listening out for her scratching. I’m wide awake then for an hour or more conscious that she might be disturbing the paying guests. Trouble is I wake up even when we have no guests, mild insomnia I guess. I also have a hot flushes as I’m peri-menopausal (the insomnia could be linked to this). All these factors are contributing to the twitching? I’m not going down the HRT route & am trying to eat more Soya based foods for the Phytoestrogen effect.

One thing that is different I’m taking vitamins for the past 5 or 6 weeks, something I never did before as I eat a healthy diet & am rarely sick. I’m taking Vitamin B complex and Evening primrose oil (Gamolenic acid) as both of these are supposed to help with hormone imbalance. The twitching started not long after I started the supplements. I wonder if there is a link there? Something else to Google lol.

I am in my mid 50′s, male, and have had muscle twitching in my calves for about a year now. The twitching started in the left calf about ten months ago, and just very recently switched sides. The right one is now twitching equally and is more pronounced. Sometimes it subsides to just a dull pulsing feeling going towards my Achilles tendon area in the left calf. The twitching is almost exclusively occurring when I am sitting down, and not too much when lying down, or any at all when standing. I have also developed slight twitches in my right thumb, and to the back of that hand, which has occurred for almost as long as the left calf twitching has. I have had a battery of tests in the past four months and the neurologist says I have BFS. I too, started taking multiple supplements about 18 months ago, prior to any of the twitching occurring; B12, and Thyroid Boost at that time. I didn’t notice any twitching then or for the following 9 months. I fell down a flight of stairs injuring my lower to mid back about two months after the start of those supplements. No twitching resulted from the injury then either, but i did have sciatica symptoms in my left leg. Then, I fell again last May. Mostly on the same side, my left hip area and lower back. This happened when a buddy accidentally pushed me through a doorway. I landed hard on my left hip on top of a hardwood floor and with him on top of me. I am not one to normally fall down, so these two falls closely together my have caused some sort of damage to my back/hip? I have had constant lower back pain since these falls, but it was more pronounced after the second one. I am awaiting a MRI for this. Those two falls may explain an injury which is causing the leg twitching, but the thumb and hand twitches, the random twitching in my forearms, and in my arm up by the elbow, how can that be related to a back injury? So, I doubt it is the problem. In the Spring of 2015, I started taking additional supplements suggested by a regular MD / Naturopath; They are Coenyzme-Q10, and R-Lipoic Acid. These came first starting last May. Later, towards the end of 2015 I started NAC, DHEA, a desecrated thyroid hormone, and an oral testosterone steroid. These supplements all were directed by a very respected MD who works in conjunction with a Naturopath. The related blood tests and the deficiencies they noted mostly added up to my age, and possibly heredity/diet and led me to taking these supplements. Now, I am starting to eliminate some of the supplements as I noticed the twitching first started about 2 months after taking the Q10 and R-Lipoic Acid (also about the same time as I had the second hard fall?). So, starting with the Q10, after stopping it for about a week I noticed a marked improvement in the twitching. Then the calf twitching suddenly returned in week two and is now worse with it being in both calves equally. I stopped taking the Lipoic acid a week ago, but I doubt that is the culprit and nothing much has changed by discontinuing it. I am beginning day one of ‘no’ B12 today (I was taking 5000 mcg oral sub-lingual daily). It is the supplement which I have taken the longest. I read on the internet that a reaction to a high dose of this vitamin can cause a warm feeling in the arms and legs. I have that feeling in my lower legs and feet. It can also cause tingling (yes) acid reflux (yes) and lower back pain (yes). I am hoping this is the root of the problem. Now the last part, we have a history of ALS in our family. I have been tested for this disorder and I have no symptoms of that motor disease. The EMG says everything is normal and so this disorder has been ruled out. The twitching has also occurred now for far too long, and in patterns that would suggest that it not be considered anything other than BFS. Now, to find out what is really causing this incessant twitching. I am going to be tested for Lyme Disease. I have no other thoughts at this time as to what could be causing the twitching. I have two cats (one who when he was 13, we think, contracted Bartonella (a large bulge around and glaucoma in his left eye) and then he vanished. This was about a year before my own symptoms began, and we also have two dogs. The cats caught vowels regularly and brought them home, and we have deer/ticks living about 400 yards from our house where the dogs walk sometimes. The pets all would drag in ticks occasionally in some manner. We supposedly do not have the Lyme carrying ticks where I live, so this disease could be a stretch if the authorities are correct about that? I do have arthritis in both my knees and also in one shoulder. So that, as well as the twitching calves, which as I understand it are all a hallmark sign of this disease, and for which Lyme has been known to cause both of those symptoms. I understand Lyme can hide in your body for years until something traumatic sets it off. I had a major nervous trauma occur to me around May of last year. The twitching started a little over a month later. So, how is this for a set of circumstances for you all to ponder? It has me completely puzzled and I am racking my brain almost every day looking for an answer. It is driving me and everyone around me nuts.There are just so many variables in my case to consider. The twitching is just mostly very annoying. After enduring about one year of this symptom now the feeling of normalcy is all I want to experience again in my life. Any thoughts?

I too started taking the same dosage of vitamin B12 about a year ago and I developed the leg twitching about a month or so afterwards. I stopped taking B12 for a while but the twitching didn’t seem to get any better. I will be very interested to know if you have any improvement by stopping it because I’ve started taking it again but maybe should stop for longer to give it a chance to totally get out of my system. I also had a major emotional trauma about 18months ago and I’ve had very bad lower back pain for over a year on and off. I went to an osteopath last week who said the twitching really could be a result of when I injured a vertebrae in my back several years ago. I’ve been tested for MND and so far seems I don’t have that, thankfully, but the twitching isn’t getting any better. It’s mostly in both calves and feet but the occasional twitch anywhere and everywhere in my body. Also my right thumb started moving on its own a few nights ago, and I get regular cramps in my left toes. Everything you wrote is very familiar to me and very reassuring that other people have it and it’s NOT MND which I have been freaking out about for many weeks now even though I’ve been tested.

Hi All
I have had them for probably near on 10 years now I think, I do lots of cycling at a fairly competitive level. I struggle with cramps cycling too, more commonly when spinning at a higher cadence when pulling more power. I used to race Duathlon but my calves would completely lock up/cramp on the final run and inhibit my performance so now concentrate on just the cycling. It is mainly when I am under more intense effort that I get cramps or later that night after a session or race when trying to relax my calves. I do also get a lot of weird cramps like between ribs, jaw occasionally.
Sometimes it will keep me awake at night and have to try and sleep with legs partially tense.
Ice make them worse, heat no better and compression socks sometimes better/sometimes worse!!

I’m so glad I found this page. I have had severe calf fasciculations for a few months now. I was diagnose with epilepsy 2 years ago when I was 34 after having lots of complies partial seizures. I had the usual MRI, EEG and blood tests etc. Nothing relevant found (which is good!!)

I am on lamotragen for my epilepsy, it’s possible this is a side effect, although it’s not listed and I’ve been on it for 18months. I’ve been seizure free for a year so it’s not a result of those.

Everything you said is exactly how I cope. The way I sit, tense my legs, lay in bed etc. i had a neurological examination during which my reflexes were tested and had Babinski test etc, again nothing relevant thank goodness. I all but convinced myself I had MND (ALS).

Seems as though it’s one of those things that I will just have to get used to. I’ve been holding off exercising too much because I feel like it gets worse after.

I also use a compression bandage when I’m at work so I can’t feel it so much as I need to really concentrate. Thanks again for this page, made me feel like I’m not alone and weird

i had a seizure 16 months ago…3 days after taking lamotrigine started having fasciculations. told it wasnt the drugs so it was either the result of the seizure or the meds…ive stopped taking meds to see uf it has an effect…no change yet…has your twitching stopped?

I wrote a previous comment in December last year & recommended Dr David Hanscomb’s book on the neuroplasticity involved in back pain & its involvement in dysfunctional operation of the central, autonomic & parasympathetic nervous systems. His work was preceded by Dr. John Sarno’s book on the same phenomenon which he termed “Tension Myositis Syndrome” – although it has been variously called “Mind/Body Syndrome” & Psychophysiologic Syndrome. There is also a website – the TMS Wiki – where many people speak of having fasciculations as part of this syndrome.

Since December my neck pain has resolved, but the fasciculations continue. I find temporary relief with a Chinese balm called “Ping On” balm which is available on the internet.

These annoying muscle abnormalities seem to me to increase with stress and anxiety – which unfortunately they themselves increase!! It is a vicious cycle.

There is some evidence that medications such Gabapentin, Lyrica & Cymbalta may alleviate the symptoms, though I have no desire to use such potent drugs.

I have unfortunately had to discontinue the old tricyclic anti-depressant Prothiaden (Doxiepin) due to ongoing dental work (conflicts with dental anaethesia) which is a shame because I believe that this medication worked in eliminating fasciculations I had 14 years ago (after many months) since it dampens the over-activated Central Nervous System. It is often used also to reduce chronic pain.

Although I am diligently working with CBT to reduce stress and symptoms, I will return to Prothiaden as soon as the dental work is completed.

I really don’t think that caffeine, alcohol worsens the syndrome & I havn’t had any success with magnesium supplements.

I really believe this is a central nervous system disorder in which the nervous system suffers an overload situation (trauma, infection, stress etc) that causes it to get stuck in an inappropriate response. It is kind of a chaotic situation & it is therefore quite difficult to override. The downside of “neuroplasticity”. Doctors such as Hanscomb (& Howard Schubiner) believe that you need to lay down new neural pathways & suggest novel ways of doing this (journaling etc) in their books.

I’m so happy to have come across this thread!! I’ve had the exact same symptoms for 6month plus!! Started with cramps in calves/feet in the nights and then that went slightly and then I started getting tingling in my forehead and the twitching randomly in arms, face. Now it’s mainly the calves that just constantly wriggle! Quite disconcerting but I’ve started training again and my strength is as good as ever. Running seems to aggravate my calves which I guess makes Sence but I can still run like I always have.
It’s like reading something I wrote about myself reading what you guys are going through.
Well done everyone

I got the BFS with cramping . . . it’s unbelievable the dances I do while talking to people when my feet are trying to do the pretzel.

This is what works for me:
Natural Vitality Natural Calm Plus Magnesium~I like the Raspberry/Lemon (add a serving **or 2** to boiling water SLOWLY as it Fizzes up high) and Ultima Replenisher (electrolyte powder-comes in a variety of flavors) and I’m also drinking 5g of Celtic Sea Salt dissolved in 32 oz of a hot beverage (caffeine free) daily. So far this combo has done the trick for me. And no I don’t work for either company or am in any way affiliated although I should buy stock for the amount of product I buy.

I hope this ‘recipe’ brings relief to someone . . . I had *no* idea BFS even existed until about a year ago. I keep thinking that it has something to do with de-mineralization/electrolyte imbalance and or deficiencies . . . and there are a lot of things which do that but it can be different triggers for everyone.

I do the same thing (minus the marathoning ). I also wear the compression sleeves (neoprene.
; the lycra ones don’t seem to help) whenever I have to travel by air and am going to be stuck in a position where I can’t stretch my calves regularly.

Thanks for sharing this information Jonathan. I’m almost 27 now and have had this for about 10 years now. It started in a really stressful time of my life and it really freaked me out at the time. These symptoms on top of the stress I was dealing with was just too much and definitely made it worse. At first I was really worried it may have been Lyme Disease. I used to get tinnitus on and off because I was constantly surrounded by loud music being a DJ/Producer and partying in-between, but when the twitching started my tinnitus never went away and that can be a symptom related to Lyme Disease. I went to see my doctor and tired to explain what had been happening and the fact I had been dealing with a lot of stress at the same time. He basically told me it was the stress that caused it and because I had no clear diagnosis the worry was making my symptoms worse. I went for a blood test and everything came back normal.

I decided my best course of action would be to try and relax to see if it helped my symptoms, but I always had the worry in the back of my mind that it may have been something more serious like MS or ALS. Because of that I could never really relax properly, just try to forget and keep myself entertained with my lifestyle and spending time with friends. I was completely fine when I was at work as I’m on my feet all day and I don’t notice or feel it then, but I find it difficult to try and forget about it when I’m relaxing on my own and sat down at home. Unless your stood up, put your feet up, or tense the muscles its pretty much always there. If I really relax and take a couple of week of work I noticed by the end of the 2 weeks its definitely less noticeable, at least it seems that way.

Recently I decided to go back to the doctors as nothing had really changed after 9-10 years and I just wanted to make sure something hadn’t gone under the radar. He sent me for a few more test, checking my mineral levels or if I maybe had an over active thyroid gland, which can cause twitching. I got the result today and it was all clear. I’m going to see a neurologist next and I’m really frightened to tell you the truth. Like I said, I tend to worry it might be something more serious but with it being such a long period of time and having no other noticeable symptoms apart from the twitching (99% of the time in calves & feet but also noticeable occasionally in other parts of my body like face, arms or back), I’m really hoping it is BFS or something that has no detrimental effect to my body and life span. I can cope with the twitching as I have got used to it over the years, but I’m really hoping its not something more serious like MS. I hope that the results will help put my mind at ease and maybe help ease the twitching as I will have more clarity on my future and can hopefully put the worry behind me.

Anyway I really appreciate this thread and its nice to talk about It. Thanks again Jonathan and everybody that has contributed by posting. You just have to keep on rolling and stay positive

thank you very much for this post Jonathan and everyone’s replies.
it is reassuring to hear people are coping with this.

im 39 and what started as a twitch in the thumb a couple of weeks ago, after 3 days suddenly became twitches across the entire body – legs, shoulders, arms, trunk, head, calves, back etc. which have now persisted for the past 2 weeks, with no signs of abating. after the thumb started, i did have a brief read up on the webs and started worrying, but find it hard to believe that my worry could have caused such an extreme and widespread reaction.

admittedly i am under a considerable amount of stress, but yesterday due to the worry, i went to see a neurologist who thankfully hasn’t diagnosed any clinical weakness in a physical exam and suspects BFS. in any case he has ordered bloods and an EMG, hopefully to rule out anything more serious.

This post really is for once quite a relief to read, I have worn out doctor google and possibly self diagnosed myself with every serious illness related to bfs.
Mine started randomly when I was watching TV one day – a twitch in my leg and then my rib cage area, then my arm and so on…. In my head I was thinking what the hell is going on as I’ve only ever felt those twitches when after I’ve done intense exercise , and even then they stop after about 10 minutes .
As the days went on the twitching became all over my body – I made my self sick with worry, googling it all , convincing myself it was ALS, everyone around me thought I was going mad as everytime I went to show them the twitch it stopped. Anyway 2 months later I went to the doctor who was pretty patronising as she knows I suffer from anxiety so in a way completely dismissed me saying it’s just your anxiety luv ! Great if it goes away but it didn’t – another 2 months went by and it was still going on however this time I woke up to my thigh twitching for a good 15 minutes and continuous which it’s never done before – I woke my husband and finally he got to see I wasn’t imagining it – he put me in a bath as I was in quite an anxious state crying as I couldn’t take much more of the worrying and called the doctor.
Back I went again and this time I saw a different GP, he didn’t reassure me – instead he said I’m going to refer you to a neurologist as I can’t diagnose this but before that il do some blood tests .
Bloods all came back fine – no deficiencies .
Went to see the neurologist which I was petrified about as it seemed like dooms day , he sat me down , did some reflex tests and checked my muscle bulk and then asked me if I’m going through any stress in my life . Funnily enough yes I was and am however stress has never caused me to get these horrible sensations before . He diagnosed me with bfs also advising me to come off caffeine , get more exercise , go back to counselling and take some time out for myself . He reassured me that it’s very normal to have bfs and can sometimes never go away. 4 months later I still have it – nothing’s changed . I try not to google as much and I’ve come off caffeine completely also I have been receiving mindfullness with my counsellor however I just feel these symptoms are never going to go. I could even be in the most relaxed happy state of mind and then all of a sudden off it goes again
Thank you Jonathan for not making me feel so alone in this – along with everyone else .
The only other thing I can think it is related to is my bad back? Nerves? Who knows ! My neurologist didnt deem it necessary to do an MRI even tho it was private as he just said he’s 99.9% that it is bfs – you just have to trust these experts I guess!! X

Pleased I came across these posts, I’ve googled BFS way to much over the last 18months!! I too have BFS. 18months ago both my calves started twitching and cramping like crazy.. 24×7, relentless. Went to the Dr and he immediately told me it was BFS. A year later I had 2 disc bulges and a trapped sciatic nerve in my left leg. I had an EMG and have slight nerve damage in my left leg. Strangely after about a year the twitching in my left calf has completely gone. The twitching in my right calf is worse than ever and drives me crazy. It doesn’t stop me running but definitely intensifies after exercise. Can’t feel it when standing up, walking, and using some sort of ‘buffer’ when trying to sleep or rest definitely works. It’s just annoying as the fasciculations are so strong and persistent its hard to try to ignore it. Nothing I can do but try and live with it.

I have had twiching & tremor for 2 months. Before i had twiching, i had had stress. I worry about ALS. It always in my mind. I’m only 18 & i have lots of plan in future. I dont want to die. Plz help me! How to make sure i dont have ALS???

Npc, it breaks my heart to hear the anxiety and fear in your post. You can’t continue suffering like that. Maybe you ought to go to see the Dr to put your mind at rest. I am no expert but my uncle had MND and the early signs don’t usually start with the twitching and fasciculations most of us on this thread are experiencing.. It also progresses quite quickly as does ALS (similar symptoms again) if it helps Google MND symptoms and ALS symptoms as I did ( my husband said nooo don’t Google it!) But it helped put my mind at rest. I also googled benign fasciculation syndrome (BFS) and cramp fasciculation syndrome (CFS) wikipedia and found all those symptoms were much more up my street! I visited the Dr and he said that’s what it is without me mentioning it. So 18 months down the line and no further symptoms have appeared so I’m guessing its nothing sinister. As quite a stressful and anxious person myself I always fear the worst and I think until you see a Dr and get some advice you’ll just get more stressed because the bl**dy twitching never let’s you forget its there! Once you know its nothing to worry about then its just a matter of putting up with it. It shouldn’t interfere with your future plans, you have your whole life ahead of you. Good luck.

The amount of replies you’ve got on here is testament to how many people worry about this, and how many people don’t have ALS/MND/Lou Gehrig’s/That-Thing-Stephen-Hawking-Has!

Like many others, I suddenly got it one day at work. Twitching and convulsions in my calf muscles (both legs). It slowly spread all over. Even my f***ing face. I’m 22. I suffer from pretty bad anxiety which has caused a whole range of symptoms before. I had a blood test which was fine and haven’t bothered to follow it up. As far as I’m concerned, if it’s MND there’s f**k all I can do about it anyway and I’ll find out naturally in a year or so, so there’s no point wasting NHS money. The day they started I had a sudden rush of stress, and that’s probably related. It’s annoying they haven’t gone but after about a month, the last few days haven’t been as bad.

Anyway, thanks for your post. It’ll calm the nerves of a lot of people.

Mine started about 3 weeks ago, first in knees and now in arms, legs, feet, hands, trunk. My Dr tested my iron (ferritin) and found it extremely low. +45 is normal and mine is 3. !! I am on iron supplements which should at least make me feel better in other ways.

I am vegetarian and a distance runner. Interesting how many on here are athletes. This has made my legs VERY tired and I have had to quit running and swimming for the past 2 weeks. Scary, to be honest. Once my iron levels are up, I want to get back to it and hope the tired feeling gets better.

Dr checked other minerals and found no other deficiencies but iron. If you haven’t had your iron tested, you may want to! I will update if the iron supplements have any positive effect on this.

Thank you for writing this. It’s very comforting to know that a lot of people have it. I wasn’t thinking ALS, but my dad has Parkinson’s and that certainly was on my mind. Thanks again.

I am too really pleased to come across this website. I started with BF in my 30′s where I was doing a job where I was standing every day for 12 hours or more (my own business!). Then they disappeared after I returned to a desk job. Two years ago they started again, at a time where I started a new job and was under a lot of stress. My mother died of ALS or MND as we call in the UK and unfortunately we have this as a hereditary gene (my uncle died of the same thing). Obviously the first thing I did was see a specialist and he confirmed that I had BF. I could be tested for the gene for MND/ALS but what’s the point, I’d spend my time worrying and probably my BF would get worse. What does seem to be a common thread in the women with this disorder is a change in hormones, and I have to say that I am at the time of life where my hormones are changing, so maybe there is something in this??? I also found a website ages ago where a guy had said he had BF and had found a cure using the electrolyte sports drinks. I did try this for a while but found the drinks a bit unpleasant, however on saying that I bought the powdered version rather than the fizzy drink… so maybe this would help??? There are days that I get pain in my calves (today being one of those days) but I think walking or movement of my legs does actually help. After exercising the BF does get worse, unfortunately, but then there is no answer. I am glad I came across this website as it is good to hear others points of view and how they cope with it. To summarise, I do think stress is involved or maybe the starting point/kick off of this horrendous disorder lets just hope somebody somewhere finds a cure.

As has been said by a few people already, I’m so glad I came across this thread amongst the numerous ALS/MND results that come up for every google search for muscle twitching. I’m now convinced (almost) that what I’ve got is BFS, rather than a lethal muscle wasting disease (phew!). I’ve had twitches pretty much all over, especially biceps/triceps and calves, for about 2 months. They come and go a bit in regularity, but are generally worst at night (while trying to go to sleep without worrying about them!), or when I’m sitting quietly. I’m not actually sure if this is just because that’s when they’re easier to notice or not. Although correlation doesn’t equal causation, mine started about a week after I recovered from a ‘flu-like illness’, where I was sick for about 3 weeks with a cold that became sinusitis and then bronchitis. So given that one of the main hypotheses around BFS is that it could be auto-immune related, this fits with the idea that I’ve got a whole heap of annoying antibodies floating around doing something unwanted to my neuromuscular junctions. The main problem for me has definitely been the anxiety that I’ve got something serious. To make matters worse, I’m a 2nd year medical student, and about two months before I got the symptoms, I’d just finished our neurology block, complete with examination of a patient with motor neuron disease – of which prominent fasciculations were by far the most memorable symptom. Damn that stuck in my mind. I keep on having to remind myself that I don’t have the major muscle wasting that this patient had. Anyway, just thought I’d add my little anecdote to this collection. Good luck with everyone, and thanks Jonathan for the post.

I suffer this problem, the onset of which is directly related to running and cycling. I don’t mean recreational speed and distance. I am an endurance athlete, and I train a lot. Running fast, or long distance will bring it on, and it lasts all day. I had serious knee surgeries 12 yrs ago which interfered with nerves, and I get oedema from inflammation around the injury/surgery site (bilateral problem). But the fasciculation was there before the operations, after extreme exercise, such as an 8 hr cycling race. So. I was always prone to it, but now it is chronic. Solution for relief – I started wearing full compression stockings to alleviate the oedema, and they are 100% effective for that. I use full toe to knee type, from sports gear manufacturers, such as Compressport, 2XU or CEP; the latter I rate highest. I wear them most days, post-exercise until I go to bed; I do not sleep with them on. Now, the good news is that the stockings control fasciculation to a high degree, so that discomfort and concern is very minor. Similar effect to pressing your calves on a surface, but way more convenient. Good luck.

My symptoms started after an intense session on an exercise bike 3 months ago. My calves looked like a bag of worms and the fasiculation has not really stopped since. It now affects my quads, hamstrings and buttocks. Being a medic myself I was convinced this was the start of ALS except I did not have any weakness and still do not have. I have had blood tests for Magnesium and Calcium levels and Lyme’s disease – all normal. I am monitoring my calf circumference for signs of wasting and running and going to the gym to try and keep fit and strong. I know BFS is clinically and statistically most likely but still a worrying time even for someone in the “trade”.
I think a web resource like this is very helpful and reassuring and would like to thank John for going to the trouble.

Oh my James! I have been monitoring my calf circumference too!!! I do not have weakness or wasting, but I do have twitches, jerks, and pain (sometimes feels like a little cramp or the beginning of a cramp).
How are you now?

I’m losing it a little even after meeting with Mayo clinic and having all the test run blood, physical, EMG, Nerve Conduction, MRI etc..

My symptoms started in November with a small twitch in my lip. That went away after a few weeks but was replaced by twitching in my right shoulder,neck,bicep,arm and hand. The Neurologist said after tests I have an Ulnar Entrapment as well as problems with my c5 c6 c7, he also said the twitching was benign and no need to come back for follow up. I did Google from day one and my Aunt is dying of ALS now. I know I need to trust the doctor but my twitching and perceived symptoms and anxiety is really wearing me out! What to do?

Hello all! I am a narcotics officer on drug task force and i work serious hours. In my off time I am an avid runner. The twitches all started in August 2015 after working a long night on a traffic detail with lots of coffee consumed! I also googled and i also thought I had ALS . I went to a doctor and a neurologist. EMG was negative I have tried reducing my stress but the twitching is constant in both calves, sometimes I get them in my arm, face, and back. I am glad I came across this thread. I still run but I quit coffee and all caffeine nothing helps. Looks like I have to live with it.

Hi everyone great reading all these comments seeing my calves are like most people with the twitching and sore after work or exercise for the last year. Really notice 2 things many people have in common with me and each other. 1 so many people in the world don’t exercise but it seems most people on this site have a running or biking regime that they have or had and 2 a lot of people coping with stress and or anxiety some with medication.
Anyways I’m suffering through this but it’s settling to know that it’s not life threatening and may just disappear in time and even if it doesn’t life will go on and I will just roll with it, it’s hard sometimes I feel alone and a bit of a freak but reading your comments have put me at ease. Thanks everyone for sharing it’s important.

I guess I’ll be joining this club then too! Had twitches on and off for a few years (remember seeing a GP about them a few years ago who told me I didn’t have ALS). They came back noticeably in my left thumb in early Jan this year, then moved about and have now settled in my left calf, pretty consistently, with little pops and zaps everywhere else from time to time so the other parts of my body don’t feel left out. Freaked out about ALS all over again, seen the neurologist, had the EMG/NCS and all fine. Twitches aren’t going and I guess they’ll wane eventually when I find another killer disease to worry about. And, as noted above, I have chronic anxiety (mostly health) and have in the past done a lot of running and cycling.

Good post above and it is actually surprising how common this problem is.

I came across this thread last Summer when my calves (and other random muscles) started twitching.

Unlike many of you I did not, unfortunately, have a regular exercise/biking regime. It literally seemed to come from nowhere. I went to the doctor who prescribed Baclofen to help with the twitches. That, however, resulted in an increase in anxiety because within a week my muscles felt significantly weaker; carrying groceries was no longer easy, I had a hard time with fine motor skills such as putting in my contact lenses. Which then made me wonder ALS/MS?! It took about another week for me to look up the Baclofen side effects and see that muscle weakness was a rare but not unheard of side effect. Phew! I told my GP that the medicine didn’t work and made me weak, she then suggested me take a very strong antidepressant with muscle relaxing properties. I had no interest in the other unwanted side effects of a strong antidepressant. Fortunately, she agreed I needed to see a neurologist which took a few months to get the appointment.

I am a scientist and know much about the brain-body connection so I realised my anxiety would only exacerbate my awareness and the sensation. I don’t know if that helped or if time helped as well but I didn’t notice anything the months of Nov and Dec. Then after I returned home from a Christmas visit with family, the twitches resumed. Seriously?! Good thing I kept my Neurology appointment.

My neurological exam was completely normal. She said she’s seen this where people start getting twitches and then 8 months later they’ll be gone. It’s thought that it may be viral in nature. I can’t remember if I had a cold before they started but I did come down with a cold after my Christmas trip so maybe that stress on the body reinstated the twitching. The neurologist set up an EMG/NCS test. I had it today and it was completely normal – no nerve damage, muscles fibers are being recruited normally. He said it’s probably BFS, since all other serious neurological conditions have been excluded. He actually had someone in yesterday with the same story!

The fact that the twitches came back and are lingering is annoying but it is reassuring that nothing is seriously wrong considering the anxiety got so bad I was considering seeing a therapist. BFS is a disorder of exclusion so only medical professionals can give you true piece of mind. I kept hoping it was BFS after reading all the other horrible things on the internet (I knew I shouldn’t have).

I thought I’d post my experiences since I just got the clean bill of health. It’s great these resources exist.

I’ve been diagnosed with BFS about 10 years ago. 38 years old now, have it in my calves 24/7 and from time to time in my face. Had the whole ALS/MS scaring period before. Especially while my father has spastic paraparesis and is in a wheelchair because of that.

Some things that relief the symptoms for me
- a glass or two of wine. Seems like the alcohol suppresses the fasciculations.
- hot bath, makes it less painful.
- drinking water, it gets noticeably worse on a day where i don’t drink enough water.
- Zolpidem is very effective for me to fall asleep when my legs go crazy.

I have had BCF for about 8 years now. It started after I got heavy into cycling. I have noticed it gets worse after long rides and with dehydration. Didn’t realize so many people have this odd condition.

Like pretty much everyone, I was convinced of something seriously wrong.

The tremors in my calves started for me after a couple of months if extreme stress. I’m very active and normally lift three times a week and train twice (or once plus a game).

I injured my right calf in a game and in working on it one night (massage, sonic massager, foam roller) it flared up excessively with extreme heat and pain on the inner side. Then the tremors started a day or so later. Then, the big one, they started in the left calf – this is where the anxiety levels went through the roof as I became convinced of something to do with the central nervous system.

Coupled with the stress issues I was having I developed an acute level of anxiety and a visit to the doctor (who said the calf tremors were nothing to worry about!) resulted in me being put on beta blockers (propanalol). These had horrendous side effects for me which, in a sick irony, only caused more anxiety as I became even more convinced something serious was being missed.

I had a severe panic attack in the middle of the night. Were it not for my girlfriend I would have called an ambulance. I thought I was dying. I was terrified. I had no idea what was going on. I felt very challenged to be told this was a panic attack but once again, I had been checked over and everything was ok.

In the days that followed I came to terms with the fact that I was suffering from anxiety and that this is what had caused the episode in the night. Through this I also came to terms with the verdict from the GP that the tremors are nothing to worry about and that it was these fears of “something big” that had driven me to this place.

Unfortunately, the negative reaction to the propanalol resulted in me being put on atenolol (also terrible!) so I am now trying to come off these horrendous drugs that, in fact, I did not need as this was all self-created due to my fears about the calf tremors.

Ridiculous, I know.

Where I am just now is trying to come off the beta blockers over the next few days. I am waiting on an ultrasound appt for the right calf (as there is still some scar tissue in there on the outer side). I have felt more inclined to believe the GP that there’s nothing major going on but this blog has now swung it for me.

It’s been *immensely* helpful to have found this. I cannot thank you enough – and the same to all who have posted comments on here too.

My muscle fasciculations started back in 2009 after taking Lariam (Mefloquine ) as an anti malarial before traveling to South America. I am wondering if anyone else has had that side affect. I still have the condition.

The first time I noticed fasciculations in my calf muscles was 1990. I was an athlete at the time on crew team and a US Air Force officer candidate. The onset of symptoms was at about the same time I started suffering from panic attacks…. We didn’t have doctor google back then or even an internet to go searching for diseases. I thought I had MS or something the only motor neuron disease I was familiar with at the time…… I was actually more concerned with the panic attacks and I figured they were related. I received drug treatment for panic disorder but the fasciculations never went away. In fact my calf muscles have been fasciculating pretty much constantly 24/7 since 1990. So for those of you worried this is going to progress to something else, I can assure you it is not! The bad news like other people have said is there is really nothing that stops them. I tried giving up caffeine and taking supplements, doing various excercises….. Nothing really helps. My advice is that you really just need to get used to it and stop worrying.

I have had BFS in my calves now for about 10 years (24/7). I was a professional boxer and it definitely seems to be the case that this syndrome is more common in the physically active and athletes.

When the twitching first occurred I was extremely anxious about ALS etc. and had regular panic attacks as a result. I am now 31 and although I still have BFS I no longer worry and only really notice it now after exercising.

There is really no point worrying and on the plus side my calves are huge as a result of the constant stimulation

I am really pleased to see that BFS is “relatively normal” I was having a cup of coffee a couple of weeks ago. I was sitting with my one foot on my other knee looking at my calf. I suddenly noticed that it was like I was looking at a lightning storm from a satellite. Little twitches were going off randomly all over my calves. My wife and I did some research on the internet and i was convinced i had some form of Motor Neuron disease and I had the vision of myself looking like Stephen Hawkins in a short period of time . My wife came to the conclusion that it was a magnesium deficiency but this did not diminish my concerns. I went and saw my GP who referred me to a Neurologist. I saw the Neurologist yesterday who tested me for weakness and reflexes. He then told me about Idiopathic calf fasciculations. I am still somewhat concerned that it could develop into MND but it has been a great relief to find this website and find others who have the same problem but have remained healthy

I first noticed bilateral twitching in my calf muscles just over a year ago. It was the beginning of 9 months of acute anxiety, panic attacks and many other physical symptoms which I now know were a direct result of the stress caused by my total belief that I had MND. It didn’t help that I received poor information from a GP.
For those of you who are worried please don’t be. I would never have believed the reaction the body can undergo under stress.
I was on antidepressants, sleeping tablets and I totally withdrew from all social arrangements.
After 7 months I was referred to a wonderful psychiatrist who helped me back to my normal, happy, sociable self.
I still have very mild, hardly noticeable twitches but everything else has stopped (whole body jumping, feeling hot from head to toe, electric shock type feelings, tingling and numbness etc. All gone , nada.
My belief is that my stress caused all the above apart from the initial twitching.
If you are suffering with twitching as Jonathan says, see a competent GP, one who you have faith in. If he has any doubt, no matter how small he/she will refer you. If you are told not to worry then do just that. Walk away and put it out of your mind. Your twitching is likely to subside or stop in time.

I’m so glad I found this site. I have had twitching in both of my calves the past 2 months (the left a little more than the right), along with occasional twitches in my quad and arms (only when I’m nervous really.) I’ve always been an anxious person and freaked out when I read the symptoms of motor neuron diseases. Anybody else feel like I do? No weakness, no nothing. Just twitching. BUT, it does go away for the most part when I’m standing, or when I’m relaxed at night watching TV and when I’m asleep. Once I wake up, I feel like my mind is just expecting the twitches. I had my first anxiety attack in February and was diagnosed with an anxiety disorder. Coincidence? Any help that you guys could give me would be appreciated!! As I just keep worrying…and that definitely isn’t making it better.

I’m a member of the calf twitching club. On a site note, I have Sarcoidosis, a disease that a lot of folks could have an never ever know about. You only find out after a biopsy, often done for some other reason. I just chalk any weird symptoms in my life to Sarcoidosis as that can cause just about any symptom.

Hi, I posted on here a year ago after having bfs for about 2 years now. Have it in both calves. The left calf has eased off a bit tho the right calf has intensified somewhat and never stops. I also get excruciating cramp in the night with it. It’s interesting how a lot of people that suffer with this are physically active. I am 43 and workout frequently and have done for years. My bfs started when I had disc bulges and a trapped nerve in my piriformis. I could hardly walk and was off work for 8 months, developed a slight limp and after having an emg found I had slight nerve damage in my left leg. The twitching started about then. Weird, it drove me mad. Tried magnsium, didn’t work for me. Saw a sports therapist and he gradually sorted my back injury out and released the trapped nerve but the twitching never went away. Started working out again. A year on the fasciculations are still constantly present in my right calf and definitely intensifies if I work out everyday. I’m certain it was my back injury and nerve damage that set it off. It is annoying but guess there is not a lot I can do about it.

I’ve had this for 5-6 months (initial perception) and intensely for about ten days. 99% is in my calves. Im a 47 year old male, and yes I’ve got stress and I exercise frequently. What absolutely works for me as previous posters have alluded too is compression. I take a Velcro/nylon strap (the one Im wearing now is about two inches wide) and wrap it around my legs about mid calf. You of course don’t want to cut of circulation, but the pressure makes it so the twitches are not felt that much. This allows me to get on with my day and not think about the twitches, which can drive you (or at least me) crazy.

My physio actually referred me to this feed. I have a disc bulge at l5 s11 and has been proven by mri and CT scan. I had problems in my sciatic nerve and numbness in my affected sides toes. The sciatica went away with physio and the numbness has subsided. About 16 months ago my right calf started cramping for no reason at random times this then turned into intermittent twinges in my right calf, which then developed into permanent 24×7 twitches. Definitely made worse by exercise. Hot water bottle helps and pulling the leg straight and toes back. I’m hopeful that it will pass and fade as things improve? I’ve decided to be active, try some electrolytes and try and forget all about it! Anyone with any advise is more than welcome.. Good luck fellow sufferers

WOW, Ben you symptoms are pretty much identical to mine. I started running about 2 years back and I think I was a heal striker, which I think cause me to get just one episode of what was a sciatica I was told. I woke up and got off the bed and the pain down my right leg was so severe after about an hour I ended up in the ER, where they gave me intravenous paid med and that helped. Next day I went to orthopedic and he gave me something in my spine to reduce the inflammation as he thought. After that my toe has been numb, I have constant fasciculations and if I relax it will cramp up especially if I try to rotate my foot inward. This is ongoing but seems to get extreme after long 7-10 mile runs. Dr says listen to your body and do something else. He says consider your age and be smart stop doing what causes the issue. He explained that the nerve is like a wire with insulation. The insulation part can be damage and it could repair itself, but once the insulation part is punctured then its almost guaranteed to be require some surgery to repair. I do a cardiovascular and resistance training program put on by the Kinesiology department at the University of Texas in addition to running and I definitely get the symptoms more after running.

I guess what I’m reading it is caused by a damage nerve and not much to do about it. I’ve not read of anyone just refraining from doing anything physical for quite some time to see if that helps resolve.

By the way the damage nerve is due to some compression of the spine on the L5. I also had a EMS which is a method to determine if, which and how much the nerves are damaged by electrical stimulation and they measure the time and response from point A to point B. This also confirmed the MRI I had that showed the spine compression.

I was hoping to hear someone say they went to some therapy and got it resolved.

I have foraminal stenosis and spondylolysthesis at L5 S1 and initially thought my leg issues were from a disc compression (which I have), but now the BFS is in other parts of my body. My Dr doesn’t see how it can be connected to the stenosis but I do wonder if it is disc related or otherwise. I’ve had it for 4 weeks and just saw the Dr last week who diagnosed a severe iron deficiency (normal is 45, mine is 3). Will see if the iron supplements help and then will get PT. I will update. Hope you’re feeling better.

Hello there I’ve been suffering with BFS for 10 years now and I can say there is nothing you can do about it but keep you head high I get the fasisculation in my face continually down to drugs when I was young I think it’s to do with my central nervous system lots of withdrawal but anyway it’s good to find a site like this and just put a little message for people to read I was 17 I’m 26 now

I have had fasciculations in my calf for over 3yrs now since having an L5S1 herniated disk removal after nerve compression left my leg completely numb. The nerve has been permanently damaged and left my foot partially numb. It does not really effect me on a day to day basis. I work as a gardener and regularly jump up from the weeding when my leg is about to cramp up. Things are worse after a very heavy day and any attempt at stretching out the calf muscle causes a severe cramp that locks my calf and ankle. On bad nights I have found compression socks help. It can be a right pain in the backside but I feel reassured it’s nothing more sinister.

I’ve had BFS for over ten years. Like others, I haven’t found anything to stop it. I’ve seen doctors, changed diets, had blood tests and nothing it out of the ordinary. There are a few things that make it worse. Hard runs definitely make it worse- and they closer they are to bed time, the more likely I’ll be awaken with severe cramps. Seems that the more sedentary the muscle is when the fasciculations are bad, the more likely there will be cramping. The other thing that seems to worsen the problem is alcohol, specifically red wine. @Cory – Interesting to read that your herniated disk is the source. I have suspected that a compressed disk was my source after exhausting everything and realizing that it was discovered around the time that I started having fasciculations. I will say that the longer you live with them, the more they become the norm. I’ve noticed them at their worst sitting in front of the TV with my legs propped up, yet have no issue jumping into bed and falling asleep immediately.

I have had BCF for something like 8 years now. They started a couple of years after I got serious into cycling. I am a physician although not a neurologist and I can tell you that this condition is NOT caused by nerve damage as I have never had any injury to my back or legs and do not have disc herniation or any back pain or sciatica. It is also NOT caused by stress although I could see how stress might make it worse.
For me, hard exercise and dehydration make it worse. I am going to try cutting out caffeine and increasing water intake.
I’m hoping someone stumbles on to a solution for this annoying ailment…..

I wish mine would stop.
12 years, multitudes of drugs and it gets worse with each year that passes (Yes, the deterioration is that slow)
There is not a step I haven’t taken in hoping to reverse this but it just spreads.

I don’t know if I have BFS, but I assume that is what I have. I am visiting a neurologist very soon and having an EMG done, if only to rule out anything very serious.

My fasciculations started a few weeks ago. The first time I became aware of them was when I had a tingling on the upper right side of my right calf. I looked at my calves and saw the movements. As time went on I began to get twitching as well and that is where I am now. Right now, I only get these fasciculations and twitching on the back of my calves. Ironically the original twitching on the top right of my right calf has now gone.

My backstory:

1/ I am overweight, but have lost 25kgs over the last 18 months. Intend to lose the rest…another 25kg to bring me down to my ideal weight. I am 59 years old.
2/ I had very high sugar, which I reduced to normal through diet. I eat mainly organic fruit and vegetables and limited red meat. I also eat organic chicken and turkey. No junk food, no processed food and only healthy fats.
3/ I damaged my ankle, which prevented me from exercising for just over a year.
4/ I resumed walking for 30 minutes once a day last year and have now resumed the gym after the ankle got better.
5/ My blood work is excellent and there is no trace of mineral deficiency.
6/ I am naturally anxious and had sleeping problems last year, which I overcame naturally, using lavendar oil and taking valerian occasionally.
7/ I take a 500 mg per day magenesium citrate supplement, but have done for several years, so not sure that that makes any difference.
7/ The tingling bothers me the most when I am sitting down and relaxing or lying down.
8/ I also notice the fasciculations when I get up in the morning and go to the bathroom

Things that have helped me:

1/ A nightly massage on the calves from my wonderful wife – before sleeping. This has helped me very much.
2/ Trying to relax.
3/ Regular exercise.
4/ Raising my feet on a stool when sitting down.
5/ Stretching

As I sit here right now, I have no tingling and am not sure if there are fasciculations. I have been out for a 30 minutes walk this afternoon and also used a machine called a Revitive circulation booster for 30 minutes, which stimulates the feet and calf muscles and the blood flow supposedly.

My gut feeling about all of this, is that my BFS is caused by anxiety and lack of usage of my calf muscles when I had the ankle problem for one year. It could also be a reaction by the muscles to the reduced sugar levels in my body, but that is a guess. From personal experience I can tell you that there are huge noticeable changes in the body when you cut out sugar and get your sugar down to normal.

So that is my story so far on BFS. Thanks to everyone for sharing theirs.

Mine started in late December of 2015. It started as a mild tingle in my big toes and fingers. It felt like someone was pulling a string under my toes. Over the next couple of months it progressed to full on “bugs” in the calves and “buzzing” sensations in the feet and hip. The buzzing really drove me crazy as I kept thinking my phone was in my pocket on vibrate. I would feel similar buzzing in the bottom of my feet from time to time. Numerous doctor visits later and I had had every blood test you could get, CT scan, two MRIs and an EMG test all revealing….absolutely nothing.

My neuro isn’t a fan of the BFS term since it is basically the same as saying “we don’t know why it is doing that”, but he told me there was nothing more that could be done and I’ve been on gabapentin since. The gaba might help, I can’t really tell. After about 6 months the symptoms started easing and by 8 months I barely noticed it anymore.

Fast forward to December of 2016 and it comes out of nowhere and hits me again. Not quite as bad overall, but the buzzing in the feet is much worse than before. The calf twitching isn’t as bad this time. The buzzing, from what I’ve researched, is really just really fast twitching.

As far as triggers, I figure it is one of two things. One is just colder weather and pressure changes in the winter. That would explain why it eased up during the summer. The other is exercise. Both times it started within days of my starting to get in shape after the holidays. Exercise intolerance is often a factor with BFS.

Im absolutely beside myself, making myself sick with worry of aLS. Im 31 with an 18 month old daughter, 4 weeks ago i had one twitch in the back of my left thigh, lasted a whole24 hours then stopped, but then my left calf started twitching and hasnt stopped since, every time i sit or lay it starts, even if i wake up in the nighht after about a minute it starts again, its now in my arch of my foot too and my toes, i get occasional ones on my stomach left side, arms, right calf but always in my left, im so terrified dont see a neuro for another 3 weeks, and dont know if you can have bfs in one leg???? i feel weak too after doing strength tests then after a while the feeling passes?

My name is Jacob and I am a 21 year old male, I am in fairly good shape but for the past year or so I have been experiencing twitching in my calfs (The Most), Upper leg (Like Above my knee and quads/hamstring’s) these are the more common places I feel the twitching but I also get them in my torso ocassioncally and in my back and sometimes arms and bladder area but not nearly as frequent as my calfs/legs. I would say about 5 months ago I checked myself into the hospital because I was so terrified of this because I got on the internet and looked up my symptoms and sure enough ALS was the number one answer. I had a Catscan done and my brain which they said was normal. I also had some minor blood work done there and they said my Potassium levels were low & I was slightly dehydrated (but I believe that was just from some substance abuse which I no longer do). Months later here I am freaking out again because my twitches are back (they never left I guess I just got a little adapted to them or my paranoia is back and it’s not going away this time). My twitches seem to subdue everytime I walk around, stand, run or basically use my muscles. Recently I have been staring to feel some fatigue but it comes and goes I keep trying to tell myself this isn’t ALS and it’s just BFS and I won’t lie my stress and anxiety levels are high but I feel like I manage them sometimes and my twitches are still there and I try my hardest not to let it get the best of me because Stress/anxiety as I’ve been reading is like fuel to the fire for BFS. I don’t have a doctors appointment until early next month because I just had to change my PCP, once there I will of course get blood work and talk with him/her about everything and hopefully get into a neurologist to get an EMG done as soon as possible but I’ve read for many people they’ve had to wait up to 9 months to get one done. I’m freaking out big time I don’t really feel any muscle fatigue occasionally my legs feel a little like jello but I also work at a place where I’m standing for 5+ hours everday almost. I don’t think I feel any difference in the strength of my legs/arms and the reason I’m saying that is because sometimes I feel like I’m just scaring myself into thinking there’s some actually weakness because I continue on with my day with no problem and my legs never hurt not even after a good workout at the gym. Then again I also think that’s just because I’m 21 and have a lot of energy. Anyways I’m here basically because I feel really alone st times because nobody in my family can understand the amount of stress/anexity this can out on your body and I feel like the only time I really get any sign of relief if from reading threads like this because it gives me great hope that I’m going to be okay and I don’t have ALS. But I would really love to hear back from you guys… from anyone on your opinion truthfully !!! On what I’m going through right now.
Thanks so much and I’ll be checking back frequently to see if there’s any replies

i get the whole jello feeling in my legs, my right calf has been twitching for 9 weeks nearly now, saw a neuro who insisted if i was his own daughter he would be happy to say i dont have als, but benign fasculations, i have them also pop up in my cheeks, stomach, back, thighs, toes twitch, fingers, i get jerks sometimes, i get a weird weak feeling in arms and legs sometimes with no real weakness, he just said too young, and not als. so im going with that, and given your only 21 i would think the same, he also said in als symptoms DO NOT come and go, and twitching is normally unnoticed by the people who have them in als and isnt a initial symptom. anxiety fuels the fire, i suffer severely with medical anxiety, and when im distracted and think positive they either subside or i dont notice the twitches.

I have suffered from anxiety and panic attacks since the early 90′s. About 2 month. Ago my calves started crawling. I can physically see it. Like worms are in my legs. Has since moved to my thighs and upper back. I’ve been off anxiety medicine for about 3 years and I’m driving myself insane, I’ve had an eeg due to brain zaps, an emg and have no als. Mri was done a week ago but haven’t got results yet. Its driving me nuts, becoming a physiological problem with me now. COULD THIS BE BFS? PLEASE HELP

Mine started the same way.calves to thighs to back . I have anxiety attacks as well . I’ve had the twitching for 3 months and had every test under the sun . Today I got diagnosed with bfs. As if anxiety alone isn’t enough, let’s throw some twitching in there to make us panic. It’s miserable

Hi I seem to have muscle twitching in my left calf and hamstring. It starts as soon as I seem to relax or sit down to drive. It’s got worse over the past 2 weeks to a state where I can’t sleep. The pain is horrendous and has brought me to tears. My calf muscle squirms and twitches. I have a blood test tomorrow and hope I can get a diagnosis. I have been given amytriptaline for the spasms which doesn’t really do anything but knocks me out and makes me feel like a zombie. I have read some suggestions and will try supplements after my bloods are done.when thinking back I have had back injuries so the doc is trying to rule out a lower disc problem. I just want rid as it is pulling me down so much.

My twitches started the third week of February of 2017. I noticed a slight twitch–it felt like a tickle–on the top of my right foot on the instep when I sat in a certain position. That lasted a couple of days. Then on 2/22 I started having multiple bilateral calf twitches and that hasn’t stopped. It’s been almost three months. I also have twitching in my feet (mostly arches) and ankles, hands, forearms, face (mostly lip and chin) around eyes (including one eye cramp—talk about a weird feeling!) I don’t notice the twitches when walking or moving the affected muscles. They are madly distracting when sitting or driving. I’m turning 65 soon and was always in excellent health with no health issues whatsoever until about two years ago when i developed LPR, which gave me my first ever case of sinusitis which took six months to resolve. Near the end of the sinusitis I developed pins and needles in my forearms, hands and feet which would come and stay for days and then go. I also developed parasthesias, specifically the feeling of a hair brushing across my nose, face or arms, and itching all over. All of these would come and go. I’m now thinking these were precursor symptoms to the twitching and are all related.

I did the Dr. Google too and had the same anxiety raised, more so because of my age. Since the pattern of the twitches is widespread and sporadic (except the calves which go all the time when not in use) I really don;t think it cold be a MND now, but because I haven’t had the twitches for long I still worry. I’m a registered nurse and usually an excellent diagnostician so this really threw me for a loop. I am always wondering why.

I have read about everything I can find and belong to the Facebok support group so have heard all the stories which seem very similar. I was not an excerciser–just walked a few times a week with hubby. After the sinus thing I was very deconditioned and am trying to get back into walking but I tire very easily. Not sure if this is just deconditioning or the BFS realted exercise intolerance. Most likely it’s both. All my labs were normal except i did have a high serum iron which i never had before (it was 165). I was told that as a post-menopausal female I should donate blood regularly to keep the iron level down, which I have been doing. All other iron studies were normal. no mineral deficiencies. I tried the magnesium with no effect. In fact nothing makes a difference in my case so far. I’m just trying to learn to live with something that could well be a chronic and long lasting condition.

I did have a high dose flu vaccine two weeks before the twitches so if this has an autoimmune component tat could have been the tipping point. I have never had a reaction to the flu vaccine and as a health care professional I have had the vaccine annually for decades. Never the high-dose though, so who knows.

I also have Gilbert’s Syndrome, a fairly common genetic variation in the way bilirubin is metabolized that affects from 5-10% of the population. Oddly, it’s associated with longevity due to bilirubin’s anti-oxidant properties.

I have not seen a neurologist. I saw my GP for my annual wellness exam and that’s when I had the labs done. My GP was not impressed by the twitching and just shrugged it off. She said if I wanted to see a neurologist to go ahead. I’m just waiting and seeing what happens for now.

I came across this website while doing research on my leg cramps and twitching. About 1 month ago a really bad cramp in my left calf woke me at night. It was sore for almost 2 weeks – tender to the touch. Since that night, I noticed my calf seemed ready to cramp again at any time and it started twitching constantly. Now my right calf is doing the same. In thinking back on the night of that bad cramp, I remembered I had had a tough, stressful day at work, then had a lot of work to do at home so I was on my feet for over 12 hours without a break. Plus I must had been dehydrated because I forgot to drink water at work because I was so busy. All added up probably. I have tried magnesium supplements, vitamin c, potassium and extra hydration including coconut water. I found a leg cramp quick dissolving pill (from natural health store) that I take before bed, and a leg cramp cream that I have been massaging into my calves before bed. Gets me through about 4 hours of sleep now. Which is better than before. Don’t know if this will work over time for me but its getting me by for now. I feel like the twitching and cramps are becoming more frequent so I plan to keep searching for different remedies. I used to be really active in the past – played tennis 3 or 4 times a week – but over the last year I had no time to exercise. Think that may be part of the problem but I am going to work in some more exercising and stretching to see how that helps. And it seems like I have to find ways to reduce my stress levels. Thank you to everyone who has posted because it helped shed some light on what I have been going through and has given me some ideas on coping with it.

Just got diagnosed today with bfs after countless tests. Gosh I hope in don’t have this forever. I have bad anxiety and don’t know if I can deal with this daily. It makes my anxiety terribly worse cuz the twitching is all I can think about. Mine tends to be worse when I sit, lay down or drive. This makes me feel like I’m going crazy. The twitching started inn my calves, then went to my thighs then to my hip then to my butt, now my upper back. Does it ever stop

I was eating a bowl of cereal before work and noticed my left little finger twitching. Nothing major, things have done it before and put it down to a trapped nerve. It carried on, on and off for the rest of the day. Same the next day at which point I started to dwell on it and scare myself that it could be ALS or MS (I have suffered with healthy anxiety on and off since the rocky birth of my daughter in March 2016 – happy to report she’s a fit healthy and crazy 16month old now!!).

The day after all this I felt nauseous, chronically fatigued to the point I struggled to stand up thinking my legs were about to crumple up beneath me and feeling like my arms were lead weights (even though when I actually used them and my legs my normal strength was there).

This fatigue feeling lasted for a good week to week and a half plus numerous panic attack in-between which probably reinforced the negative feelings.

I went to the Dr who said it could be post viral fatigue as not that long before I had suffered with a bad bout of IBS (courtesy of a sickness bug from my daughter). The weakness sensation in my arms continued and then, surprise surprise, I noticed my muscles twitching like crazy in both calf’s and in the arch of both feet. They some times wrap around to the shin as well. I’ve taken recordings of it in case they don’t do it at the doctor’s – sometimes I can show someone and they stop, we change the subject and off they go again…

I went back to the Dr and explained the anxiety of what I thought it could be was terrifying me and needed some form of clinical examination to get the ball rolling. She referred me for an EMG which I had last Tuesday on both arms and my left leg. I get the results the end of this week.

The twitching – I DO NOT feel or see anything in my legs and feet when I am walking. Literally as soon as I sit down at my desk at work, or at home on the sofa with legs on the table or in bed, they go crazy. If I stay in the exact position for 10mins or longer they either fade down or stop completely. As soon as I walk to get something and sit back down, boom they’re back and so it starts again.

I have been told multiple times that anxiety can cause literally ANY response in your body and once in a cycle of negative reinforcement (i.e. I can feel them all the time therefore they’re always in the back of my mind therefore I’m reinforcing my worry about then) it can be very difficult to snap out from. I absolutely want to believe this is mind over matter; too many things point to it not being something sinister with the absence of other symptoms and presence of perfectly explainable ones but of course that one seed, as most people here will understand, is so embedded that it is extremely difficult to shake off until you are categorically told, it is not that.

I started taking a combined calcium, magnesium and zinc supplement yesterday as someone told me that can help – I’m willing to give ANYthing a go.

Whilst I hate to think other people have this it’s also nice to realise I’m not alone and many people have/are experiencing similar and this has definitely reassured me.

Here’s hoping we all get the answers were looking for and these annoying flutters decide to do one!!!

I was diagnosed with bfs in nov 2015. It’s very annoying but comes and goes in waves. Sometimes I can barely feel them sometimes they are strong. Mostly in my calves. Also have vibration/tremors sometimes too, magnesium helps a little.

Guys BFS is related to Gluten sensitivity , BFS is an auto immune disease ,gluten attacks the GUT and the brain and nervous system is closely related to the GUT, Epilepsy , Alzheimer , BFS and migranes are all symptoms of Gluten sensitivity , gluten exams are not worth is since you might be gluten sensitive but the results might come up negative , so stop eating breads , pastas , pizza and also milk since milk is inflammatory, also NEVER drink caffeine ! just do a search , BFS and gluten sensitivity and you will know what I am talking about.

After reading all this information I truly believe I may have BFS Like so many others I have the twitching, spasm, cramps in my calves which commenced October 2014. I had a bilateral facet joint injection in my L4/5 back. This was done August 2014 due to my lower back pain. Unfortunately I didn’t really get any relief to my back from this procedure but instead of helping I ended getting the spasm pain twitching in my right calf. This got me thinking they may have damaged a nerve, no one would or could confirm this and it took me down the track of GPs MRI’s Scans, Neurologist etc etc all with the results coming back normal (which is a good thing) but not giving me any answers as to why I was experiencing such pain and discomfort which lead to anxiety. I was put on antidepressants which may or may not have helped. I feel it helped with my anxiety and yes I guess I was given some relief for approx. 12months on and off even though I would still experience symptoms the pain wasn’t as bad and the cramping not as often. I got back into exercise and life was going well and I took myself off the medication (gradually) Fast forward to 2017 I started having pain in my right knee so commenced seeing someone for that and unfortunately was unable to exercise or if I did the knee pain hurt but then I started getting all the cramping and spasm, twitching pain etc back in my calf again. The knee specialist couldn’t understand the connection and just focused on healing the knee. Nov 2017 got an injection in my knee which seemed to help the knee but still constantly having pain twitching etc in right Calf. Back to GP, blood tests, MRI’s all tests coming back normal except very low in Vit D. About to start taking that but in constant pain daily with the cramping, twitching etc I’m hoping I may feel a little better at least once my Vit D comes back to normal however another common thing I have found is if I drink Alcohol OMG it really aggravates it the next day and several days later so I think my days of enjoying wine or bubbles is OVER It is not worth the pain. No-one around me understands and I even took a video of my calf twitching, spasming to show my GP to try and show her what I’m talking about and she just looked dumbfounded. I, like so many of you are at my wits end with this. GP has prescribed antidepressants again to hopefully help with my anxiety as it is Raging out of control due to the pain and worry this condition is causing me especially when no-one understands what you’re going through. This has been going on this time for 8 months and seems to be getting worse as I now have the same thing happening in both calves. Why is there not a magic pill out there to fix this however in saying that, now I have come across this website I actually feel a little better because even though I have not been formally diagnosed the similarities are amazing. Earlier when this came about I was tested for MS ALS etc etc and thankfully these tests came back negative therefore I am very grateful however this condition still is very painful, and debilitating some days as I feel I can hardly do anything because of all the spasming and miss my exercise even though I have days where I feel quite good I start to exercise (walking, riding bike, etc) and it just seems to trigger it off even more. Fingers crossed there’s some relief out there but thanks for this website….feeling not so alone

It was pleasing to read your updates and see that you have solved your issue.

I have a similar issue if less severe than yours. I link it to exercise and possibly work related stress. My calves look like there’s something crawling underneath the skin, although you can barely feel it.

Interesting that yours appeared almost instantaneously after combining a run with giving blood. I did read somewhere that a lactic acid build could impact the condition.

I’ve noticed other issues with myself that feel related. Namely, a similar pulsating/rumble in my ears, especially if I stressed, and only at night when I’m beginning to rest. Also a very strong, albeit slow, heart beat, which is very annoying when trying to get to sleep. My wife can even feel it and she is laid next to me. I’m generally pretty healthy, 48 years, 170lbs, resting HR <50 BPM, so I'm not worried. I just wondered if you had anything similar.

You may want to get your iron checked if you haven’t. hearing your heart in your ears and a rushing sound is a sign of iron deficiency. I saw my Dr about BFS and she found my iron to be incredibly low and prescribed iron supplements. i hope it helps. Please don’t take them without getting your iron tested though bc too much iron can be dangerous without a deficiency diagnosis.Hope you’re feeling better.

After coming down with bad anxiety nine months ago after my mother passed, I’ve now developed muscle twitching in my calves nonstop for about two months now, I also get the vibrating elsewhere. Had blood work done & the horrible EMG test, all negative. Thank God for that but with the anxiety it makes it all worse.

Thank you all so much for your comments and thank you Jonathan, for starting this badly needed forum. A year and a month after my mother passed away from complications with ALS at the age of 83, my calves began to tingle, and they haven’t stopped. I also get a feeling of a tingle or twitch at different places throughout my body, too. Seems to come and go. I’m 59 years old and have freaked out on numerous occasions reading on the Internet that this was ALS, especially being that my mother was diagnosed with it a month before she passed. When I told my doctor, she said it was probably a deficiency with B-6. I’ve been on a 100mg/day and the tingling and twitching hasn’t stopped yet. I was glad to read the comment about cycling. I cycle a lot – at least 100 miles or more a week and this year, my knees are also painful. Today i hiked/jogged 5 miles and I weight train 2-3 times per week as well as try to throw a yoga session in once or twice a week. A month ago I rode 300 miles in 3 days to support ALS from Boston to Connecticut and raised $2000 for ALS-TDI in memory of my mother (it really was a beautiful ride) I also try to meditate daily so I’m not stressed thinking that these twitching sensations will lead to ALS. Just wanted to thank everyone for their comments and suggestions.

Been dealing with the calf twitching for about 8 weeks, Struggled with back pain for a couple of years. Over a period of 2-3 weeks I was involved with some intense physical work in very hot weather. I was super dehydrated several times. Shortly after that my calves started to twitch. I also freaked myself out with internet searches. All of you have given me some ideas. I can sleep at night but have many of the symptoms mentioned in all the posts. Been to the doctor, physical therapist, massage therapist and now the chiropractor. Hopefully I can keep my anxiety under control. Thanks everyone.

Anyone who hasn’t had their iron checked may want to. I came down with BFS a few weeks ago and after trying to ignore it I finally went in. Dr says I have severe iron deficiency and that iron or other deficiencies can cause this. I have to wait 4 weeks to see if supplements work. I haven’t had the painful all-night spasms in a few days, but the BFS is still all over my body. Like most of you, I[‘m an athlete and find this VERY frustrating. Hopefully iron will make a difference, if it does I will post! Good luck to you all and thanks everyone for posting, especially for making this page!!

Anne, it’s ironic you just posted on iron…I have had mild muscles twitches in my calves for years. I don’t know when they started because I really only noticed them, back then, when I was at rest in the middle or after strenuous exercise. But, I also suffer from IBS. And the thing that now controls my IBS (and it really works, for me) is a set of herbal antibiotics called Candibactin-AR and -BR. The AR’s main ingredient is oil of oregano (BR’s is berberine). What I did not know was that oil of oregano can affect your iron. So after I began these this past January, in a comprehensive annual blood test I had in February, I noticed my iron levels were about half of what they typically were. Coincidentally, since my iron levels are normally on the very high end of “acceptable”, halving them kept them in the “acceptable” range, but in February they were on the low end. I have not had my iron levels tested since, but lo and behold, when I really started noticing bilateral fasciculations in my calves was ~March, and by August they had progressed into both feet and were of far greater magnitude than I had ever previously experienced. My EMG yesterday confirmed BFS. I have just recently started on mild iron supplements, taking them with lunch. I still take the oil of oregano with dinner. The purpose is to still keep the IBS under control but get my iron levels back to normal.

Iron supplements can harm you pretty badly if you take too much. Be careful. I’m starting slowly, and seeing what affect they might have. But note, I do not know if reduced blood iron gave me BFS. Remember, in a much milder form, I had bilateral calf fasciculations long before my blood iron decreased. Best of luck, and please update if or when anything changes.

Hi! I am new here. I am 44, and just yesterday I was diagnosed with BFS after an EMG performed by an ALS expert. I wrote a very long story about my personal struggle with the anxiety of thinking I MIGHT have ALS. But it turns out that I had very much to say, and most posts here are rather short. I do not want to selfishly absorb this board’s space, so I have decided against posting it, even though I know from my own experience that reading or listening to the details of others who went through what I was going, those who presented with the same symptoms, went through the same mental struggles, had some of the same characteristics as myself, momentarily gave me sense of reason and calmness in my sea of anxiety. Those people are the angels here. They are trying to save you, me, and others from the same pain. I will leave my post reasonably short, hoping that at least one person will read this and be able to move on with their normal life and look forward to a long, beautiful life.

Here is what I know about fasciculations as they pertain to BFS vs. ALS, confirmed by the voice of the world expert in ALS who tested me with an EMG just yesterday (11/8/2018), where my official diagnosis is now Benign Fasciculation Syndrome (BFS). ALS usually starts in one location, such as one foot, one hand, one arm, one leg, or perhaps the neck/head (bulbar). ALS usually presents first with weakness, where a person does not even realize they are weak until they cannot do typical things, like walk normally, button their pants, hold a plate, dictate their words, etc. Strength loss in ALS initially presents without numbness, without pain. Weakness just sets in. The muscle weakness tends to spread pretty quickly after the first symptoms. It spreads at different rates in different people. Often, muscle twitches also occur, which in ALS are representative of progressive loss of nerve connections, which result in permanent muscle loss. Since muscle twitches CAN be the first presenting symptom of ALS (but usually are NOT), people perusing the internet about their muscle twitches can end up in a dark emotional rabbit hole of believing they have something that they do not. Fasciculations in ALS and BFS are basically the same, their traits are very difficult to discern on characteristics of individual fasciculations alone. So don’t look up that video on YouTube trying to see if your twitches are distinguishable from those with ALS. For any single muscle group, the muscle twitch patterns are mainly the same. But don’t worry yet. ALS is rare. And while BFS is also classified as “rare”, the reality is that muscle twitching is actually quite common, some say up to 70% of humans have muscle twitches at some point or other. You, most likely, have BFS, which is far more common than ALS. Most people with BFS never worry about it. Let’s face it, if you didn’t query the internet about muscle twitching, you probably wouldn’t be reading this right now. And most people with muscle twitching probably either don’t notice or don’t care. It’s you, and I, those that over-analyze this, that fall into this trap in the first place. If there’s one thing I know, it’s that those #$*! medical sites that say that muscle twitches may be a sign of ALS, that is NOT helping anybody, and I can’t believe that they do not provide any further details on the subject so that they aren’t scaring the heck out of people. But, that’s a different subject…

In BFS, no permanent muscle loss occurs. If muscle twitches present initially bilaterally (e.g., both legs, or both arms), this would be atypical of ALS, which in limb-onset ALS usually starts in one leg or one arm. If muscle twitches jump randomly all around your body, that is a sign of BFS, not ALS. In BFS, twitches CAN get worse over time. They CAN progress from one area into adjacent areas of your body. They CAN be 24/7 in one or more “hot spots”. They CAN be strong. They CAN feel like creepy-crawlies, or worms under your skin. They CAN last for months, years, or decades. They CAN go away (but may not). BFS does NOT cause ALS. People diagnosed with BFS very rarely end up with ALS in the future. BFS does NOT cause any long-term or permanent damage to the affected muscles. Your muscles and nerves will not degrade if you have BFS. There is very often no known or detectable reason for the muscle twitches. It may be neuro-muscular (e.g., spinal disc issues), or chemical imbalances in your body. Some people are, simply, more susceptible to BFS than others. BFS IS often directly associated with stress and anxiety. Some research suggests that the vast majority of BFS is either caused by or exacerbated by anxiety, and if the anxiety is decreased, the BFS symptoms should then decrease. If you do not have perceptible, clinical weakness, you almost certainly do not have ALS, period. Forget about it. ALS is a disease of weakness, not muscle twitching. And if you have muscle twitching but no clinical weakness after about 6 months of that twitching, chances are extremely good that you have BFS, and not ALS. Don’t take it from me, that’s exactly what I was told by the ALS expert yesterday.

If you continue to worry about ALS even after reading this, that means that you need to calm your fears through the doctors. See a neurologist. Discuss your symptoms…all of them. Don’t be afraid to say that you might be nervous, scared, or anxious. If they want you to take a test, do it. Quickly. The longer you wait, the more stress you have to deal with, and the worse your symptoms will probably get: stress and anxiety do crazzzzy things to your body. If they tell you that you do not have ALS, believe them. ALS is almost always apparent to the expert eye; if not visually, then by a physical exam, or by the ultimate decider, an EMG with nerve conduction test.

Many of you reading this are nervous, scared or anxious. Trust me, been there done that. I don’t have ALS. I never did. I wasted too much of my life letting that anxiety control me. I don’t want you to waste yours, life is too short. Time to gain my life back. I have BFS. I can deal with that. So can you.

After reading your post I did feel better up until the six months part as I’ve been told my two doctors my muscle twitching is not ALS after they done a physical exam on me and I’ve only been twitching for six weeks. Now I’m terrified because I have to wait another four and a half months!

I wish I could upvote this comment more than anything. I get most of my twitching in my calves when I sit and I do have a very tight lumbar and back issues. I also sit at a computer all day and have what is called ‘Tech Neck’ so my biceps, forearms, and sometimes hands twitch a little. I have no weakness that I aware of.

Hi guys, I think it is underlying anxiety in 99% of cases. Especially us (here) who bother to examine and check – in fact, as a statistician, I can tell you that any observation based on our comments (about causes of bfs) would not be valid (selection bias). It is a symptom (not syndrome or disease). My cortisol is increased by 2x than normal upper level.

In my case a severe relationship stress and work stress caused this symptom just over night (a year prior to that night I developed eye floaters that increased anxiety by 300% – you are lucky not to have that one as it is in front of your vision all the time, but I overcome it). For me, insomnia that followed was much worse than twitching. Insomnia lasted 3 months (insomnia can also cause twitching as body and cells do not recover in absence of deep sleep).

Twitching sometimes pauses for a couple of hours (even calves stopped for a day), but ups and downs are horrible. For me, breathing helps a lot, CBT, NLP therapies. I have this symptom for almost 3 months (other symptoms I had at the same time: heart palpitation, fatigue, bowel problems…)

Our body can cure almost any disease and cause almost any (mind can change emotion and start pumping hormones). There is a hope, but we need to overcome anxiety first.

Hey guys,
I’ve got a very similar story to many here, and reading through all of them definitely helped, so here is mine.

31yrs old, very active – cycle 70 mins to work and back (round trip) everyday, as well as gym 4 – 5 times a week. First noticed twitching in my calf, it would be present for a few hours a day, and then disappear. Over a period of month it became more and more common until my calf was literally wiggling all day everyday.

This is the point when I started to panic. I booked an appointment with a doctor, and managed to get an appointment 3 weeks in the future. During this time I noticed the twitching spreading, first my hamstrings and quads. Then my back on arms, finally my face started twitching.

As with everyone here assumed the worst and google certainly makes in easy to think that you’re dying. The more I worried the more the symptoms spread and the less I slept, and the more I worried.

Spoke to the Doctor, who immediately advised me to see a neurologist. The neurologist was great, within 20 minutes of being there he said its BFS. Still to ease my concerns I had and EMG and an MRI, which showed no damage, and that I was in perfectly good shape.

Its difficult to overstate how much I was worrying. As soon as I got the diagnosis of BFS, the twitches in my face and upper body and stopped. By worrying I was making the twitching spread further.

I still have near constant twitching in my calfs, but I can learn to live with that I think.

Still trying to work out what makes it worse, definitely worrying and thinking about it makes it worse. I also think exercise and caffeine contribute. Im not going to stop exercise, but willing to give up coffee.

I have had this for over 25 years ever since back surgery for a ruptured disc . The disc contents had imbedded into the nerves in my spine which caused Cauda equina syndrome . This meant I had to have emergency surgery to prevent permanent damage i.e paralyses . It is now causing severe cramps at night I have pain in toes and numbness in part of my lower legs and feet . I am 62 now and finding it harder to jump out of bed at night to stop the painful cramps . I just have to put up with it and it’s so soul destroying.